Hip Replacement with Severe Balance Issues….this could be interesting.

Today….what I learned at my doctor’s visit, my concerns, and how I’m preparing for everything.

I was really shocked when I saw the CT scan of my hip.   Here’s a little quick sketch of what I saw:

by w. holcombe
by w. holcombe

As you can see, in late September I had a perfectly round head on my femur, it looks normal.  The CT I had taken on February 13th, showed the femoral head collapsing.  It is amazing how fast this condition has progressed.  No wonder the pain has progressed so much.  As my doctor said, I’m have a square peg in a round hole.  My leg is now shorter than the other, it is throwing every thing off.  The pain in the joint is very bad.  I haven’t talked about it, but I haven’t been able to walk much.  I can’t walk at all without a walker supporting my weight.  I spoke to a new friend who has this in a number of joints and she said this pain is comparable to bone cancer.  Wow.  I don’t think mine is that bad yet.  Some days I think it gets up there though, but not all the time.  It does ache all the time, I hover around a 7, it never goes below a 5…and that is rare…it does spike to a 10, but I’m lucky it doesn’t stay there long.  It is a very sharp pain when I move or try to put weight on it.  I can’t take narcotics.  They make me feel like things are crawling on me.  I can’t take NSAIDS because I’ve had an ulcer.  The most I can take for pain is Tylenol, and I don’t want to take too much of that, it can damage your liver.  So, I meditate, and I really baby my hip.  If I could take narcotics I could probably move around and do more.  As it is, just the trip to the doctor on Monday left me in so much pain I didn’t sleep much on Monday night, and Tuesday was so bad I couldn’t get up long enough to get myself lunch.  I simply couldn’t do it.  Luckily, Stuart had gone to work very early and came home early, so I got something to eat and much help for the rest of the day.

I got a LOT of information from my doctor.  He told me that many people could have received the same amount of steroids I did and never acquired Avascular Necrosis (AVN).  Guess I’m just lucky.  *grin*  Some people may just have a predisposition to it.  Of course, thinking back, I have had a whole lot of steroids.  He also said this is progressing fast.  There are some other treatments for this, but most are just stop gaps and you end up having to have a hip replacement anyway, and if your femoral head has lost it’s shape, like mine has, you can’t do most (if any) of them.

So, hip replacement is a GO!  I don’t have a date yet, waiting for the appointment setter to call.  I’m sure it will be a little while out, because of things that have to be done before hand.  I have a whole packet of things to be done, things to help you understand more about the procedure and things that are going to happen afterward…..it’s very thorough.  If that weren’t enough, there’s a class, yep a class to explain everything you may have questions about; the procedure, home health care, physical therapy…just about everything.  Don’t know how I’m going to sit through a class without excruciating pain, but I’m going to try.  Stuart said he’d go alone, but I think I should go.

There are a lot of people who have joint replacements, obviously, for them to have a class.  They have really thought of everything.  There will be a home health nurse that will come out twice a week to check my blood because I will be on coumadin to reduce the chance of blood clots.  This has to be monitored closely. (often they just put people on a high dose of Aspirin, but again, I couldn’t do that because of the ulcer thing) A physical therapist will be coming to our home to work with me instead of me having to try to go out to physical therapy.  My doctor said that PT is mostly just walking.  There will be post op services coming out to help set up the house for us, if I didn’t already have one, I’d be getting a walker (I may be getting a new one if they can get me one that fits in the bathroom), a tub bench, and a 3 in 1 bed side toilet.  I wondered what the 3 in 1 was, that means it works a bed side toilet, or railing to hold on to use your own toilet, or to use as a raised toilet seat.  Funny thing, I have one of these back in Durham, Stuart got it a long time ago thinking it might help when I have vertigo, but it didn’t, if I could sit up, I could go to the bathroom.  (you can’t really sit up when the world is spinning like crazy!)  I’ll also get a grabby thing to help me reach things so I won’t bend my leg more than a 90 degree angle.  Also, a special thing to help me put on my socks and shoes.  Stuart laughed, both of those things have been his job for a long time.  Due to my dizziness I can’t pick things off the floor, I was shocked that my doctor knew this!  I haven’t been able to put on my socks and shoes since September.  So this will be a relief for Stuart, and make me feel much more independent.

OH, I forgot to tell you more of what my doctor said about the surgery itself.  I will be in the hospital 1 – 2 days.  I won’t have anesthesia, that doesn’t mean I’ll be awake during the operation, but I won’t be put under a deep sleep.  I’ll have a spinal block.  So I won’t feel all icky, I won’t get sick, and I won’t have to worry about them putting a tube down my throat.  It’s kind of cool.  He told me that most people with this condition tell him that the pain they have now is instantly gone after the surgery.  How cool is that?  He said I will be sore from the incision but I probably won’t hurt worse than I do now.  He said first off there will be a lot of local anesthesia that will take a few days to wear off and that’s when the incision would hurt the worse.  He has been impressed that I have been able to tolerate this much pain without pain medication, so I think I’ll be able to do it.  However, I won’t be babying this, I’ll be working it hard with the PT.  So much more Tylenol.  Maybe a Tramadol now and then, but even that makes me feel funny if I take it too often, but I can take it every couple of days.  He said he will make my legs the same length….yay!  He said I may out live my hip replacement.  All I can say about that is…..life is unpredictable, so no biggie.  I could get this hip replacement and get hit by a bus in a week. No one knows the future.  *shrug*

I’m not afraid of this hip replacement surgery.  I really haven’t been afraid of the surgery itself.  I’m afraid of the hip replacement surgery in conjunction with the rest of my stuff.  Having a severe balance disorder with sudden vertigo that comes on without any warning could be a very big complication to my recovery.  As my doctor said, we can try to plan and prepare for everything, but this is something we simply can’t change.  It’s something we have to hope luck will be with us.

I’m already a VERY CAREFUL person.  I use a walker all the time.  I stay close to walls so if I do have a vertigo attack I have something I can grab and try to fall easy, just slide down the wall.  However, I still fall, OFTEN.  I fell the last week in such a position that if I was recovering from hip replacement surgery there is no doubt I would have dislocated my hip and possibly fractured it.  I simply let go of my walker to sit on the couch and suddenly got dizzy…..WHAM!   This wasn’t even full fledged vertigo, this was just a tilt of the world.  If I was hit with bad vertigo there would be no keeping my balance no matter how hard I tried.  I can’t tell up from down the world is spinning so fast all around.

This is my concern.  Recovering from hip replacement surgery with Severe Meniere’s Disease…or “more than Meniere’s Disease”  what ever they want to call it.  A severe balance disorder and sudden onset vertigo.

Perhaps I should get a Bubble Wrap Suit???  Too hot?  Probably so.

Stuart is going to take time off to be with me during my time in the hospital.  Of course, if he’s completely bored he can work while he’s there.  My doctor said the room I’ll be in is big and has a day bed so Stuart can stay right there.  Since I have a special diet, we can pack me up some food and they will warm it up for us there.  He said he wouldn’t trust the hospital to get it right.  Yeah, I wouldn’t either.

Stuart will most likely be able to work from home for most of my recovery period.  At least for the most difficult part. We don’t know yet, because we don’t know when things will be, or how long it will be.

Going to get our house more prepared.

Not going to worry about my balance problems and my recovery.  I can’t control the future, so no need to worry.  Just be aware and extra mindful of every step I take.  Prepare as much as I can….but worry….no.  Be afraid…no.   One moment at a time, right?

image from sayw.com/quotes
image from sayw.com/quotes

 

Avascular Necrosis….that’s a scary diagnosis

It’s official, I have Avascular Necrosis (or Osteonecrosis) in my left hip.  What is this?  Let’s look at the word Osteonecrosis, Osteo – bone  necrosis – death.  You have to remember that your bones are living things.  They have a blood supply.  When this blood supply is lost, or disrupted, the bone begins to die.  That is what is going one with my hip.  Particularly, the head of the femur.

click on photo to find out more about osteonecrosis
click on photo to find out more about osteonecrosis

I’ll tell you more about this condition after I see the doctor on Monday.

Right now….I can tell you I have it.

I had my CT scan on the 13th.  I’ve been dealing with a lot of waiting with this whole thing and I’ve been handling it well, but I decided I’d check in with my doctor via email yesterday, just to see if he could look at my CT scan and let me know what he saw.  I was getting a bit anxious.  My pain has been intensifying, and my balance has been even worse (not just from my ears), I thought, “Hey, the worst he can do is say he can only tell me these kind of things in person.”

Within 2 hours the nurse called Stuart and told him that my doctor was out of the office, however, she got another doctor to look at my CT scan and yes I have Avascular Necrosis.  She also moved my appointment date up from March 24th, to March 2nd.

At this point I don’t know what stage I’m in, but I do know it hurts, a lot…..more than I care to admit.   There are treatments that they do try when you are in the earlier stages but, it is a very small chance that you won’t end up having to have a hip replacement.  The earlier treatments are kind of like a stop-gap.  They help for a while, but most of the time it comes back.  It sounds to me like end up doing a hip replacement most of the time.  The amount of pain I’m in tells me I may be a little bit further along than we thought, so I may not have to even worry about thinking about all of that.  My doctor didn’t sound like he was very keen on putting people though unnecessary surgeries, just to end up having a hip replacement anyway.  So, I’m looking at a hip replacement.  I know it will make me feel better, and I’m very relieved about that.  I look forward to discussing everything with my doctor on Monday and making a plan.

I won’t lie, I’m very nervous about all of this.

Oh heck, I’m TERRIFIED.

I’m afraid of having a hip replacement.  I’m afraid of Stuart having no help.  I’m afraid of getting this place ready for me to be able to get around in during recovery. I’m afraid that I will get this necrosis in other joints.  (since they think my Avascular Necrosis is because of corticosteroid use, it could show up in a different joint, normally the other hip.) I’m afraid of the pain after surgery, I don’t deal with pain medication well, it makes me itch.  I’m just scared, OK?

I’m trying very hard not to think about the future…succeeding very well aren’t I??  I’ll be seeing the doctor on MONDAY.  We will make a plan then.  I will have more answers at that time.  Me getting all worried and fretting is doing no one any good, especially ME.  So what am I going to do for the next few days until I see the doctor?

  1. I’m not going to read anything else about Avascular Necrosis, or Hip Replacement Surgery.
  2. I’m not going to talk about it….well not much.
  3. I’m going to meditate.
  4. I’m going to do relaxing things….maybe watch a movie, read some of the book I just got from the library on my Kindle…..ect.
  5. Spend some quality time with my husband, something we haven’t done enough of lately.
  6. try my best to enjoy myself….laugh!
  7. eat good and healthy food.  I made up a new recipe, I hope Stuart’s up to trying it out.
  8. Take care of ME!

If there is one thing I’ve learned about me, it’s that I’m pretty darn tough!

No matter what, I know I can handle this.

Chronic Illnesses, one comes up, another is put on hold….

I know, I haven’t posted in a while.  I feel like all I do is the same old thing, talk about me, and how I’m falling apart….or how I’m dealing with my life and not falling apart. Hopefully the later more than the former.

Well, here I am again, writing about things going on in my life….I was writing a friend a letter and thought, I really should put this in a post.  This is part of the reason I started a blog.  It isn’t just for other people, it is for me.  To get things out, and to keep up with things.  Sorry folks, I hope you don’t mind sometimes just coming along for the ride.
image courtesy of pixgood.com
image courtesy of pixgood.com
Of course one of the main reasons I started this blog  is to let people know they aren’t alone on this Chronic Illness journey.  If you are anything like me, if you have one Chronic Illness, you have more….and things are always coming up…..so this is what’s going on right now……I’m a little overwhelmed…again.  I’m trying hard to take it one moment at a time, then some times I’ll sit down and think about everything that is going on and just feel drained.  Whew!  Am I really stressed and just don’t know it?
I seem to always have something new come up and have to deal with it, then I have to put something else on hold.  You will understand as I continue.  I’m going to try to make this as short as possible.
I’ve had some bladder/urinary tract troubles.  I’ve been to a few doctors for this, they run a urine test and it comes back clear, my blood work comes back clear.  But I’m in severe pain.  They will call it, bladder spasms, irritable bladder, non-infection cystitis….but they all say, they think I have Interstitial cystitis.  I need to go to a urologist to be properly diagnosed and to get better medications to help with it, but there is no cure, and some people don’t react to the treatments.  I’m lucky I don’t have severe flare-ups very often.  However, I do have little flare-ups often.  This has been a VERY SEVERE flare.  I went to the doctor on Monday, February 2nd.  Of course, everything was clear, but I felt I needed to go to make sure I didn’t have an infection.  She did give me an anti-spasmotic and they helped get me through the rest of the flare.
This sweet doctor was scratching her head with me, she said, “You have a lot going on for such a young lady.”  She kept saying, she couldn’t help but wonder if there wasn’t one thing that caused many of my issues.  Some umbrella condition.  You know I’ve never had a doctor say that to me before.  I’ve had Stuart say it, and friends say it, people on my blog say it, but doctors, not so much.  I couple of doctors have thought my migraines and Meniere’s may have a commonality but then they kind of ruled that out…maybe….kind of.  I think I might just talk to her again.  (she works with my new PCP)

On the way home from this doctor’s appointment I had a vertigo attack start.  Got home and it was BAD.  I’ll leave it at that.  You all know how what a BAD vertigo attack is like.  I didn’t keep up with how long it lasted.  I know my appointment was at 12:30pm and she was on time, and I was finally able to fall asleep WAY after dark.  I woke up sick again and it was about 11pm.  I was so nauseous for 2 days.  I’m not normally like that.  Usually after an attack the nausea leaves me after a few hours.  The anti-nausea meds work pretty well.  This time, I was really sick for days.  Ick.

On that Monday I was supposed to have my intake evaluation to start my physical therapy for my hip.  This had to be rescheduled.  They didn’t have anyone who could do this for TWO weeks.  1st thing that was put off because of something else going on with me.

The next day I had an appointment with a new neurologist at the Headache Clinic.  I had to reschedule because I was simply too exhausted to even move my head, and too nauseous.  I was afraid if I pushed it I would have vertigo again.  Now my appointment is in March. *sigh*  2st thing that was put off because of something else going on with me.

I went to see a new Pulmonologist on January 30th.  My breathing test came out good.  I do not have COPD.  That’s good to know.  So why am I coughing up phlegm every day?  EVERY DAY since October of 2012?  Yes my breathing is better, but this coughing up stuff is gross.  I get awful looks.  People seem to think I have some horrible disease.  I’m on 3 medications for Asthma that I take every day, and I have an inhaler, that I use often, and nebulizer.  And my new doctor said, “I don’t know if you have Asthma.”  What?  He said he needs to see my old records.  He also said that you can be clinically diagnosed as having asthma but they actually have to do a test to really diagnose you, and they often don’t do this test.  A lot of people don’t want to do this test, they’d rather just be treated for the symptoms.  Usually the symptoms present themselves so clearly that they are sure enough that they clinically diagnose it.  That is what the doctors did with me.  However, I was not presenting with the symptoms when he saw me.  So he needs to see my records.
There is a possibility that my acid reflux may have something to do with this cough.  So I need to have a barium swallow on Friday, February 6th .  Oh wait….I was still too wiped out from the vertigo attack and in too much pain from the flare-up to be able to do this, so I had to reschedule to February 20th.  3rd thing that had to be put off because of something else that is going on with me.
I did finally get an appointment set up for the CT scan for my hip.  It is set up for this Friday, February 13th.  I will know soon if my hip does in fact have avascular necrosis.  If it doesn’t I do hope this CT scan shows what the problem is, with all the pain I am in, I will be very disheartened if the doctor tells me he can’t find anything.   (not that I’m looking forward to, or wanting, a hip replacement)
Trying hard not to think about what may be, just living in the now, and waiting for what will come.  After all, none of my worrying about it will change anything.

Want to hear something really funny.  After all of the things I’ve been through.  All the crazy tests, all the things I’ve been told to give up….different foods and such (for example, I eat mostly whole foods, no refined sugar or gluten. I only drink water.  I can’t eat onions, garlic, apples, pears….all kinds of foods…it’s challenging sometimes.  But I have to use these food restriction of I get sick.)   I have been told in the past to restrict my intake of chocolate because of migraines.  Well, I found I could still have a square of dark chocolate now and then and it didn’t bother me.  I just didn’t over do it and I was fine.  Really, I could eat more and I didn’t have problems with my head, my tummy or bladder might not like it because of the caffeine, but my head was OK.  But if I limited it to my little square I was good, all the way around.  And I was a happy girl.  I could still have chocolate.

Dark Chocolate image from medicalnewstoday.com
Dark Chocolate
image from medicalnewstoday.com
Then it happened.  I had my square and immediately I got the worst migraine.  Oh no!  and my bladder started to scream!  What?  No!!!!
I waited a week.  I tried it again.  It happened again!  NOOOOOO!  Not chocolate!!!!
I literally cried!
I’ve given up so much.
my beloved apples.
dried fruit.
asparagus
onions and garlic
NOT CHOCOLATE!!!!
The moral of the story is….you can take away everything else from this woman, but chocolate is her breaking point!